Different Instructions for the Same Steroid

If things weren’t confusing or muddled enough, it has come to my attention that a steroid can have different recommendations in different countries. The steroid is the same and yet guidelines are blatantly different.

Let’s take Diprosone for example. This is a Betamethasone Dipropionate topical steroid.

In the UK, it states:

  • Do not use on any other skin problem as it could make it worse especially rosacea (a skin condition affecting the face), acne, dermatitis (skin inflammation) around the mouth, genital itching, nappy rash, cold sores, chickenpox, shingles or other skin infections. Ask your doctor or pharmacist if you are not sure.
  • Talk to your doctor or pharmacist before using diprosone ointment. This medicine should not be used under bandages or plasters.
  • Side effects that may happen with oral or injectables corticosteroids may also occur with corticosteroids used on the skin, especially in infants and children.
  • If the ointment is used more often than it should, or more than prescribed, it can affect some of your child’s hormones. This may affect their growth and development.
  • If Diprosone Ointment is used in children, it should not be used on any part of their body for more than 5 days.
  • Do not put the ointment under your child’s nappy, as this makes it easier for the active ingredient of the medicine to pass through the skin and possibly cause some unwanted effects.
  • Usually for adults and children, a thin layer of Diprosone Ointment should be rubbed into the affected area of skin twice a day.
  • Do not use the ointment on your face for more than 5 days.
  • Do not use a large amount of ointment on large areas of the body, open wounds or areas of the body where joints bend for a long time (for example every day for many weeks or months).
  • Most people find that when the ointment is used correctly, it does not cause any problems. However, if you use the ointment more than you should, particularly on your face, it can cause redness, stinging, blistering, peeling, swelling, itching, burning, skin rash, dryness of the skin, in the skin, inflammation of the hair follicles; excessive hair growth, reduced skin pigmentation; allergic skin reactions; dermatitis (skin inflammation); other skin infections, thinning of the skin and red marks.

In Australia, it states:

  • Do not use Diprosone if you have:

a viral skin infection, such as cold sores, shingles or chicken pox, a fungal skin infection, such as thrush, tinea or ringworm, tuberculosis of the skin, acne rosacea, inflammation around the mouth, skin conditions with ulcers,

Unless your doctor tells you.

(^^^^^^^ That seems unbelievably risky).

  • Do not use Diprosone just before having a bath, shower or going swimming.
  • Tell your doctor if: you are pregnant or breast feeding.
    Your doctor will tell you if you can use Diprosone during pregnancy or while you are breast feeding.

(^^^^^ again, whatever your doctor tells you? Why can’t the pamphlet tell me? Or is it that nobody knows and everyone is just guessing…)

  • Apply a thin film of Diprosone Cream or Ointment or a few drops of Diprosone Lotion to the affected skin or scalp twice daily. Massage gently until it disappears. For some patients, once daily application may be enough for maintenance therapy.
  • It is important to use Diprosone exactly as your doctor has told you.

(^^^^^ What if they tell you to go against the guidelines?)

  • Do not use Diprosone for more than four weeks at a time unless your doctor tells you.

(^^^^^^ And here is my point!)

  • Do not use Diprosone under dressings or on large areas of skin unless your doctor tells you

In the UK pamphlet, it says you should not use steroids on an infection site, even though the AU pamphlet says you can do it if your doctor instructs you to do so.

In the UK pamphlet, it says you should not use this steroid under occlusion, yet the AU pamphlet says it is ok if the doctor tells you to do so.

In the UK pamphlet, there doesn’t seem to be a set time recommendation to use the steroid (except for children and for the face), while the AU pamphlet says to use it no longer than 4 weeks unless your doctor says to do so, but doesn’t say how long to use it on the face.

In both pamphlets, it seems to leave pregnant women under the discretion of their doctor or their pharmacist.

Over and over in these pamphlets, there seems to be a lot of “just ask your doctor” or “unless prescribed by your doctor”. What happened to facts? What happened to “these are the guidelines and they need to be adhered to for the patient’s safety”? Moreover, there are doctors who get paid to prescribe certain drugs to patients, so where is the ethical line? Want to check out your doctor? Dollars for Docs

Also, RSS is not a side effect listed. It never is and should be. Red Skin Syndrome is not just a small symptom or side effect that will go away very quickly. This condition affects so much more than just your skin!

Doctors should also be educating their patients about steroid use, the good and the bad, as well as staying up to date with medical findings and research. Even a well meaning doctor can over prescribe this medication so it is pertinent that you know all there is about topical steroids before you begin use.

 

Patients Like Me

One of the biggest questions concerning Red Skin Syndrome is just how many people have suffered/are suffering through the condition. With the high number of misdiagnosed patients, there will never be an accurate number until this condition is accepted in the medical community by all practicing doctors.

However, there are ways of getting our numbers out into the world.

One site that can help in this process is PatientsLikeMe.

PatientsLikeMe allows you to not only enter a diagnosis of Red Skin Syndrome (of which 22 on the site have logged), but it allows you to keep track of your progress.

There is:

  • An About Me section
  • A Height and Weight section (can also find BMI)
  • An InstantMe section (you answer the same question everyday to track yourself)
  • A Quality of Life section
  • A Labs and Tests section
  • A Symptoms section (pain, insomnia, etc)
  • A Treatments and Medications section
  • A Hospital Tracking section

And, to top it off, you can follow all those with your diagnosis to see their progress and stories.

It takes about 15 minutes to set up (you get 3 stars for setting up all the categories). The most important part however is putting in “Red Skin Syndrome” as the diagnosis. That way, it can track how many on the site have this condition.

If you are not able to monetarily help the documentary project (RSS can drain our pockets), this is an important and powerful way to assist in this movement. It may not be a true database, but it certainly can help us see how many may be suffering through this. Please, take this time to fill out your profile.

PatientsLikeMe 


Thank you so much for taking the time to raise awareness about the overprescription of topical steroids and how urgent it is to get this message across in the medical community.

Medical Terminology Explained

One of the many ways we can feel left out of the medical loop is the jargon that leaves us perplexed and, most likely, uninterested in trying to understand our ailment. The doctor either says some fancy words or we end up reading a pamphlet that looks like ancient hieroglyphics. It can be daunting and when we just want relief, we don’t delve any further than the reaching to take a prescription from the doctor.

The time has come for us to decipher some very important medical terminology so we, as patients, can be best informed about our condition and what may lie ahead if we take a certain treatment.


Antiproliferative: of or relating to a substance used to prevent or retard the spread of cells, especially malignant cells, into surrounding tissues.

Atherosclerosis: a disease in which plaque builds up inside your arteries. This can cause different problems including coronary heart disease, carotid artery disease, and chronic kidney disease.

Atrophy: waste away, typically due to the degeneration of cells, or become vestigial during evolution. Picture

Axillae: Armpit

Bioethics: the study of the typically controversial ethical issues emerging from new situations and possibilities brought about by advances in biology and medicine. It is also moral discernment as it relates to medical policy and practice.

Corticosteroids: any of a group of steroid hormones produced in the adrenal cortex or made synthetically. There are two kinds: glucocorticoids and mineralocorticoids. They have various metabolic functions and some are used to treat inflammation. The ones we usually deal with are glucocorticoids that stop inflammation.

Candidiasis: infection by fungi of the genus Candida, generally C. albicans, most commonlyinvolving the skin, oral mucosa (thrush), respiratory tract, or vagina; occasionally thereis a systemic infection or endocarditis. It is most often associated with pregnancy,glycosuria, diabetes mellitus, or use of antibiotics. Picture

Concomitant: naturally accompanying or associated.

Cutaneous: of, relating to, or affecting the skin.

Demodicidosis: skin disease of the pilosebaceous units associated with human Demodex mites that involves predominantly the face and head. Picture

Edema: a condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body. Picture

Efficacy: the ability to produce a desired or intended result.

Emollient: a preparation that softens the skin.

Erythema: superficial reddening of the skin, usually in patches, as a result of injury or irritation causing dilatation of the blood capillaries. Picture

Exacerbation: an increase in the severity of a disease or its signs and symptoms; a worsening.

Granuloma Gluteale Infantum: a rare skin disorder of controversial etiology characterized by oval, reddish purple granulomatous nodules on the gluteal surfaces. Picture

Gynecomastia: enlargement of a man’s breasts, usually due to hormone imbalance or hormone therapy. Picture

Hirsutism: abnormal growth of hair on a person’s face and body, especially on a woman. Picture

HPA axis: The hypothalamic–pituitary–adrenal axis is a complex set of direct influences and feedback interactions among three endocrine glands: the hypothalamus, the pituitary gland(a pea-shaped structure located below the hypothalamus), and the adrenal (also called “suprarenal”) glands (small, conical organs on top of the kidneys).

Hyperkeratosis: thickening of the stratum corneum (the outermost layer of the epidermis, or skin), often associated with the presence of an abnormal quantity of keratin, and also usually accompanied by an increase in the granular layer. Picture

Hyperpigmentation: the darkening of an area of skin or nails caused by increased melanin.

Hypertrichosifs: a skin abnormality that results in excessive growth of hair. It can be localized to one part of the body, or affect in full. It can affect men or women and is mostly secondary to a genetic disease that causes a hormonal disorder. Picture

Hypopigmentation: the loss of skin color. It is caused by melanocyte or melanin depletion, or a decrease in the amino acid tyrosine, which is used by melanocytes to make melanin. Picture

Iatrogenic: of or relating to illness caused by medical examination or treatment.

Immunosuppressive: (chiefly of drugs) partially or completely suppressing the immune response of an individual. Topically, there is Protopic and Elidel.

Impetigo: a contagious bacterial skin infection forming pustules and yellow, crusty sores. Picture

In vivo: (of a process) performed or taking place in a living organism.

Intertriginous: area where two skin areas may touch or rub together, like armpit or groin

Kaposi Sarcoma: a rare tumor that is named after the dermatologist who first described it in 1872. It is caused by a type of herpesvirus. Picture

Lichen Sclerosis: an uncommon condition that creates patchy, white skin that’s thinner than normal. Picture

Malassezia Folliculitis: an inflammatory skin disorder that typically manifests as a pruritic, follicular papulopustular eruption distributed on the upper trunk of young to middle-aged adults. Picture

Mastocytosis: disorder that can occur in both children and adults. It is caused by the presence of too many mast cells in your body. You can find mast cells in skin, lymph nodes, internal organs (such as the liver and spleen) and the linings of the lung, stomach, and intestine. Picture

Milia: a small white or yellowish nodule resembling a millet seed, produced in the skin by the retention of sebaceous secretion. Picture

Molluscum Contagiosum: a chronic viral disorder of the skin characterized by groups of small, smooth, painless pinkish nodules with a central depression, that yield a milky fluid when squeezed. Picture

Morbidity: is a term used to describe how often a disease occurs in a specific area.

Occlusive: Of or being a bandage or dressing that closes a wound and keeps it from the air.

Ocular Hypertension: an eye pressure of greater than 21 mm Hg. It usually occurs for a long time and doesn’t match with glaucoma.

Perioral Dermatitis: a common skin rash that mainly affects young women. The rash affects the skin around the mouth. Use of a steroid cream on the face seems to trigger the condition in many cases. Picture

Phimosis: a congenital narrowing of the opening of the foreskin so that it cannot be retracted.

Purpura: a rash of purple spots on the skin caused by internal bleeding from small blood vessels. Picture

Stellate Pseudoscars: white, irregular or star-shaped atrophic scars occurring over the sun-exposed areas of the forearms. Picture

Stratum Corneum: the horny outer layer of the skin.

Striae: a linear mark, slight ridge, or groove on a surface, often one of a number of similar parallel features. Picture

Synthetic: made by chemical synthesis, especially to imitate a natural product.

Systemic: of, relating to, or affecting the entire body.

Tachyphylaxis: rapidly diminishing response to successive doses of a drug, rendering it less effective. The effect is common with drugs acting on the nervous system.

Telangiectasia: a condition characterized by dilation of the capillaries, which causes them to appear as small red or purple clusters, often spidery in appearance, on the skin or the surface of an organ. Picture

Tinea Incognito: a fungal infection (mycosis) of the skin masked and often exacerbated by application of a topical immunosuppressive agent. The usual agent is a topical corticosteroid (topical steroid). Picture

Vasoconstriction: the constriction of blood vessels, which increases blood pressure.

Vitiligo: a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause. Picture